Wednesday, June 1, 2011

Bell's Palsy and Other Detours - Part 3

It's been a while since I wrote an update about my Bell's Palsy and the various and sundry complications and offshoots that have gone along with it.  Truthfully, I never thought it would go on this long, but now that I am nearing the 4 month mark, I am no longer optimistic of a speedy recovery.  That is not to say I am pessimistic about the outcome, but I am just being realistic about the recovery time.  I am now headed into long-term illness territory and I will honestly say that I have had more than one panic stricken moment thinking about the ramifications of long-term illness, both in terms of my physical as well as my emotional well being, not to mention how those ramifications impact my family.

I won't go into the long-drawn-out diagnosis process, but rather, I will just cut to the chase and report that I have a rare autoimmune disease called Autoimmune Inner Ear Disease (AIED) along with another autoimmune disorder called Sjogren's Syndrome.  Both of which have some forms of treatments, but really no cure.  While finding out these diagnoses was a unsettling, I was glad to finally have a name for random mixture of symptoms (mind-numbing fatigue, dry mouth, digestive issues, weird rashes, dry skin, etc.) that have been dogging me for almost two years.  If I hadn't gotten Bell's Palsy, a corneal ulcer and then developed hearing problems, I don't think I would have sought out an answer to all those other symptoms that had been brewing in my body. So, in a roundabout way, I am glad to have come down with Bell's Palsy.  At least it forced me to seek medical attention.  As sick as I was, I still fought the nnotion that there was something more sinister, and long term going on than a simple case of Bell's Palsy.  If it hadn't been for the doctors who insisted that X, Y and Z be ruled out, or noticed anomalies and urged me to this specialist or that extra-special-specialist, which finally landed me in a Rheumatologist's office, I don't know where I would be right now.

Where I am now is this:  I am taking a six pill dose of methotrexate once a week, which I started on 5/8.  This will hopefully get my whacked out immune system back on track.  I have already noticed some improvement in various random symptoms, but my hearing is hard for me to measure independent of a formal hearing test.  I will be getting that tested in a couple of weeks.  I am likely to be on this medication for the next 6-12 months.  I don't like taking such a toxic drug, but it really was my only option since steroids were out of the question due to my history of avascular-osteonecrosis.  I am also taking 50,000 IU of vitamin D three times a week due to a severe deficiency.  As for the Bell's Palsy, it is getting better in small increments.  I can almost smile with both sides of my face now and I can close my left eye, but only when I close my right eye at the same time.  I still don't feel 100% comfortable in public yet.  Not so much because of my paralyzed face but because of the hearing loss.  I find it extremely hard to keep up with conversation, especially in restaurants with more than one other person at my table.  Couple that with the fact that I have absolutely no energy to spare, and it keeps me home most of the time.  I am hoping this improves because I miss my friends immensely.

So, now that I have brought us up to date on what is going on, let's talk a little about coming to terms with long-term illness.  It is life-changing.  Like it or not, when we find we have an autoimmune disease, life changes.  It has to change, as we come to the realization that our lifestyle/habits/stress level, etc. is what triggered our immune system to malfunction in the first place.  Autoimmune diseases are the only diseases in which the very thing we count on to keep us healthy, our immune system, does a 180 and actually attacks our body, causing illness.  Knowing this is so very frustrating.

I've slowly realized, that there will never be any 'getting back to normal' in my life.  No matter when my face decides to unfreeze, or even if my hearing suddenly comes back, and all my other symptoms disappear, life will never again be as it was.  I have to search for a new normal.  A new normal that includes listening to my body, includes regretfully saying No more often than Yes.  A new normal requires me to give up the guilt when I (inevitably) can't be everything to everybody.  It requires telescoping in instead of branching out.  I have to prioritize and focus my life's energy on what is very most important to me.  No, life will never be the same again; it will be very different.  But, who says different has to be a bad thing?  This could be the best thing that ever happened to me.

She is clothed with strength and dignity; she can laugh at the days to come. ~Psalm 31:25